Sleep disturbance in PSP

[Antscerqua50]

Can anyone advise on how to help disturbed sleep with PSP. My mum wakes 6-7 times in the night to get up and go to toilet and is very restless. My dad is main career and is exhausted . Thank you

[David750]

I fully understand how your Dad feels having been through it. Please tell him he is in my thoughts.My wife (PSP) woke me up often through the night for the toilet so we got her to wear pads to reduce the need to go. This initially helped. (She passed away at home 20th December last.) To help her sleep, in July 2020 she started on Lorazepam @ half tablet (cannot remember the mg) then increased to a whole tablet in August. This only kept her asleep until around 3.30am, so I moved to another room to sleep, monitoring her via a two way baby alarm (volume turned low) plus an EasyN camera (with night vision) viewed through my mobile inorder to check if I needed to attend to her, as she was apt to get out of bed. She also would make repetitive noises/groans so the camera enabled me to check what she was doing. She was in a hospital bed in our lounge converted to a bedroom.

In mid October we changed to Zopiclone 3.5mg which kept her asleep to about 4am. On 3rd November we increased the Z to 7mg. (I took the remaing Z at 3.5mg to ensure I got to sleep quickly). 7mg had little effect as we learned that at what ever level you administer the body will excrete it over the same time period. Z was stopped on 8th December due to swallowing problems increasing.

[Antscerqua50 in reply to David750]

Thank you Davis The Gp has prescribed promethiazine hydrochloride 10mg

[Antscerqua50 in reply to David750]

Can I ask what hospital bed you got for your wife ? Thank you

[David750 in reply to Antscerqua50]

I live in Scotland UK, the bed was on loan from by the NHS. It was electrically operated to raise (easier for carers to attend without too much bending) and lower (for easier transfers to wheel chairs) in total and raise head end and feet seperately. Hope this helps

[T-val in reply to Antscerqua50]

Hi, I purchased a hospital bed for my Mum (it was a steal on facebook marketplace) however the OT team told me that they would have provided one in order to get mum home after a fall. The did provide an airflow mattress too. The bed is an absolute godsend for tilting/raising head, height for carers etc. Check with OT before you purchase one.

[Antscerqua50 in reply to T-val]

Thank you this is really helpful.

[oilman1 in reply to David750]

I concur with a lot of Davids remarks. My wife (PSP) also wakes me up often during the night for toilet. I have not tried pads yet as she would take this as a major loss to her dignity but will reconsider as time goes on. She doesn't need any help to sleep as she already sleeps around 20-22 hours a day. She does take Lorazepam on ocassion but only when her anxiety levels are very high. She started @ 1/4 tablet but goes up to 3/4 when she has a bad spell. I also had to move to another room to sleep and use a call device which enables her to ring me when she needs something. I don't use a camera as she is not able to get out of bed herself. She also makes repetitive noises/groans/coughs so I don't use anything which monitors the sound in the room as it would then keep me from sleeping. I got a hospital bed which I put in the study and I use it as she will not use the "death bed".

This disease is very difficult to deal with and changes your life completely. I have learned that I need to take care of myself also as I am the primary caregiver. If I go down also, that will be two of us in the nursing home. My kids do not always agree with some of my decisions but they are also only helping out on a once every couple of months basis.

[David750 in reply to oilman1]

It took some persuading to get my wife to wear pads. I appreciate your wife's reservation, also reluctance to use the hospital bed. You are so right, the progression of the PSP time line is different for each patient, therefor so difficult to give specific helpful advice.I took ill several times through exhaustion, even though I had 2 carers in 4 times a day. The concentration needed - to ensure everything is in place for carer visits and meals under the continuous changes in the condition - is debilitating in itself without the loss of sleep. I wish you well and do hope you can get more regular family or other support.

Could I add - hospital bed mattresses are plastic and as such can cause heat rashes. My wife perspired a lot. I bought bath sheet sized towels to put under the sheets (with a Kylie on top in the pad area latterly) which I changed each tine she was taken to the toilet, placing these on radiators to air if clean. The night time one, if clean, went into the tumbledrier.

[AnneandChris]

Hello thereI had similar problems with my husband. Much easier to deal with! He wore pads and a conveen, but there maybe something similar for ladies.

He also was prescribed Clonazepam which he took until he lost his swallow a few weeks before he died on 27th December 2019.

Please look after yourself, as main caree you need to keep fit and well so that you can look after your wife.

Keep on keeping on

Anne

[LuisRodicioRodicio]

Hi Antscerqua50!These are our experiences and information:

• Control of palliative medication against depression, as well insomnia and anxiety. In our case (after 8 years from the first symptom of PSP): 1 Sertraline-50 at breakfast (depression) and 1 Lorazepan-1mg one hour before dinner (insomnia and anxiety) (**). Of course all these drugs were prescribed by a physician. After around 6 years with this medication no appreciable side effects on our case.

(**) I have read that to improve the patient's sleep are using "Melatonin" successfully. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

Hug and luck.

Luis

[LuisRodicioRodicio]

Hi Antscerqua50!

I'm sorry PSP/CBD/ etc. has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the notes-document with our experiences and our informations are of someone´s interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

[daddyt]

All above are great suggestions, one is bound to work. Clonazepam helps me fall asleep... staying asleep is the problem. You could also try soft gentle music - nature sounds played at a lower volume. Avoid anything with a running water theme.

Tim

[Gingerw3]

Our doctor used prescription antihistamines (think benedryl) and trazadone at night successfully to help my husband sleep.

[T-val]

Hi, my Mum is prescribed amitriptyline which has helped in 3 ways, it helps her to sleep and also reduces the night time toilet trips and a side effect is that it can dry your mouth which is a very beneficial side effect for psp sufferers to help dry secretions. Our palliative care consultant keeps a monthly check on us and this dosage has been tweaked when required. She now takes just 10ml a day so its not a high dose but been a huge helps for night time toilet breaks and secretions.

[Antscerqua50 in reply to T-val]

Thank you I will speak to her Gp about that , she doesn’t seem to need as much sleep and not really napping during the day

[knittingannie in reply to T-val]

Thats very useful information my relative was up at nightly between 4-8 times nothing helped lorazepam helped a little with getting to sleep . Pads were frequently removed Saw consultant once a year and a nurse once a year at the hospital it wasn't enough with the rapid progression no hospital bed either but thats Rochdale -community matron too busy to visit except once in 2-3 years

[T-val in reply to knittingannie]

Wow, we are Stockport and I cannot complain at all about the care my mum receives. Her palliative care consultant can be reached on the same day if necessary and absolutely amazing, I don't know what we'd do without her! The district nurses call each month to check skin integrity and salt team when required. Looks like we are very lucky but it's still heartbreakingly tough x

[Rubikcuber]

Thank you for posting My! My Mum who has PSP has just started saying that she has insomnia. Because Mum gets quite tired now she usually has a sleep in the afternoon and I was wondering if this was causing the insomnia. After seeing your post it seems that it is another symptom of this awful disease. We have an appointment today with her neurologist so I will bring this up. Thank you for your timely post! I'll let you know what the neurologist says.

[Antscerqua50 in reply to Rubikcuber]

Morning I read somewhere that something to do with eye movement and sleep cycle they don't need as much sleep . Hope the neurologist can give some helpful advice. Our gp have started my mum on promethazine hydrochloride but doesn't seem to help . Thank you for your reply